Price of Engagement

Patient Advocates Get Burned Out, Too

 “I get tired. I get overwhelmed. I get discouraged. I get disengaged. I get disheartened.”*

I recently stumbled onto a series of posts online written by dedicated, accomplished patient advocates (including the one quoted above) describing their frustrations and, in some cases, their withdrawal from activism. In today’s shorthand, we’d say they’re suffering from burnout. “Burnout” has become a catchall term, which doesn’t always do justice to people who are struggling with complex and varied challenges.

The problem of burnout among clinicians and staff workers has rightfully received increased attention and recently been labeled a public health crisis. Turns out, engaged patient advocates also experience burnout.

Along with the patient advocate posts I’ve been reading (disproportionately from Canada, as a byproduct of last week’s post), I also have been following a group of writers who convey the emotional and moral experience of being doctors.

In addition to appreciating the honesty and the beauty of the writing, I’m struck by the common theme of personal investment in work. No wonder patients, advocates, nurses, physicians – everyone engaged on the front lines of healthcare delivery – get worn out sometimes. Their work routinely involves life-altering decisions, intense emotions, intellectual chops, political fortitude and Job-like patience.

While there is no single, easy way to make the work of health care less draining, organizations are working to fix some of the system-based contributing factors for health care workers. Wellness initiatives and peer support will also help. Patient engagement advocates may need an extra measure of attention, especially those who are working as volunteers, multitasking as family caregivers, and generally working overtime for the cause they care about so deeply.

Here are some of the posts I’ve been reading recently—advocates first, followed by a few physician writers—in no particular order. Please add your thoughts and suggested readings as comments.

A different type of burnout by Renza Scibilia*

To What End? by Sue Robins

When Loneliness is an Emergency by Jay Baruch, MD

The Doctor’s New Dilemma by Suzanne Koven, MD

HIPAA by Alexa H. Gips, MD

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 46 post(s) at EngagingPatients.org

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